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Featured
ICD Ultra-Rare Framework Comment
May 19, 2026
ICD Ultra-Rare Framework Comment
May 19, 2026
May 19, 2026
Haystack MA Part D comment 1.26.26
January 26, 2026
Haystack MA Part D comment 1.26.26
January 26, 2026
January 26, 2026
Haystack IPPS Comment 6.10.25
June 11, 2025
Haystack IPPS Comment 6.10.25
June 11, 2025
June 11, 2025
Haystack 6.10.24 IPPS Comment
June 12, 2024
Haystack 6.10.24 IPPS Comment
June 12, 2024
June 12, 2024
Haystack MA RFI Response 5.29.24
May 30, 2024
Haystack MA RFI Response 5.29.24
May 30, 2024
May 30, 2024
Haystack MPPP Model Documents Comment
May 1, 2024
Haystack MPPP Model Documents Comment
May 1, 2024
May 1, 2024
RFI on Improving and Protecting Access to Gene Therapies
January 25, 2024
RFI on Improving and Protecting Access to Gene Therapies
January 25, 2024
January 25, 2024
Medicare Prescription Payment Plan Guidance
September 20, 2023
Medicare Prescription Payment Plan Guidance
September 20, 2023
September 20, 2023
Haystack Comments on CMS Proposed Evidence Standards NCD
August 21, 2023
Haystack Comments on CMS Proposed Evidence Standards NCD
August 21, 2023
August 21, 2023
Haystack Comments CMS Proposal on CED
August 21, 2023
Haystack Comments CMS Proposal on CED
August 21, 2023
August 21, 2023
Haystack's Comments on Craft of bill on State Integrated Care Programs for Dual Eligible Individuals
July 3, 2023
Haystack's Comments on Craft of bill on State Integrated Care Programs for Dual Eligible Individuals
July 3, 2023
July 3, 2023
Haystack's  comments on CMS’ proposed rule on the Medicaid and Children’s Health Insurance Program (CHIP)
July 3, 2023
Haystack's comments on CMS’ proposed rule on the Medicaid and Children’s Health Insurance Program (CHIP)
July 3, 2023
July 3, 2023
Haystack comments on CMS' proposed rule to update IPPS
June 9, 2023
Haystack comments on CMS' proposed rule to update IPPS
June 9, 2023
June 9, 2023
Haystack IRA data elements ICR 5.22.23
May 22, 2023
Haystack IRA data elements ICR 5.22.23
May 22, 2023
May 22, 2023
Haystack's comments in response to CMS' Notice of proposed rulemaking on Advancing Interoperability & Improving Prior Authorization Processes
March 14, 2023
Haystack's comments in response to CMS' Notice of proposed rulemaking on Advancing Interoperability & Improving Prior Authorization Processes
March 14, 2023
March 14, 2023
Haystack's Comments in response to CMS' Medicare Part B Inflation Rebate Guidance
March 13, 2023
Haystack's Comments in response to CMS' Medicare Part B Inflation Rebate Guidance
March 13, 2023
March 13, 2023
Haystack's comments in response to CMS' Medicare Part D Inflation Rebate Guidance
March 11, 2023
Haystack's comments in response to CMS' Medicare Part D Inflation Rebate Guidance
March 11, 2023
March 11, 2023
Haystack's Comments on CMS Proposal to Oppose For Rare Diseases
February 13, 2023
Haystack's Comments on CMS Proposal to Oppose For Rare Diseases
February 13, 2023
February 13, 2023
Haystack's comments on CMS' RFI related to EHB under the ACA
January 30, 2023
Haystack's comments on CMS' RFI related to EHB under the ACA
January 30, 2023
January 30, 2023
Haystack's sign-on letter providing analysis of coverage with evidence development (CED) criteria
January 13, 2023
Haystack's sign-on letter providing analysis of coverage with evidence development (CED) criteria
January 13, 2023
January 13, 2023
Haystack's comments on improving coverage for individuals dully-eligible for Medicare and Medicaid
January 13, 2023
Haystack's comments on improving coverage for individuals dully-eligible for Medicare and Medicaid
January 13, 2023
January 13, 2023
Haystack Responds to CMS’ National Provider Directory RFI
December 6, 2022
Haystack Responds to CMS’ National Provider Directory RFI
December 6, 2022
December 6, 2022
Finance Democrats Call for More Consumer Protections in Medicare Advantage
November 28, 2022
Finance Democrats Call for More Consumer Protections in Medicare Advantage
November 28, 2022
November 28, 2022
Haystack Response to CMS' Make Your Voice Heard RFI
November 3, 2022
Haystack Response to CMS' Make Your Voice Heard RFI
November 3, 2022
November 3, 2022
Haystack signs on to Telehealth Stakeholder Letter to Senate
September 13, 2022
Haystack signs on to Telehealth Stakeholder Letter to Senate
September 13, 2022
September 13, 2022
Haystack Project highlights the need for well-meaning proposals to consider impact on rare patients.
September 6, 2022
Haystack Project highlights the need for well-meaning proposals to consider impact on rare patients.
September 6, 2022
September 6, 2022
Haystack Responds to HHS RFI on Improving Primary Care
August 1, 2022
Haystack Responds to HHS RFI on Improving Primary Care
August 1, 2022
August 1, 2022
Haystack Project's reply to CMS' Hospital Inpatient Prospective Payment Systems
June 17, 2022
Haystack Project's reply to CMS' Hospital Inpatient Prospective Payment Systems
June 17, 2022
June 17, 2022
Haystack Project's sign-on letter commenting to CMS' proposed NCA for monoclonal antibodies
February 10, 2022
Haystack Project's sign-on letter commenting to CMS' proposed NCA for monoclonal antibodies
February 10, 2022
February 10, 2022
Haystack Project Applauds Introduction of the Access to Rare Indications Act
December 7, 2021
Haystack Project Applauds Introduction of the Access to Rare Indications Act
December 7, 2021
December 7, 2021

 
 
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  • Policy/Comments/
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    • Medicare
    • Section 340b
    • Medicaid
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  • Patient Stories/
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The Haystack Project is a 501(c)3 nonprofit that brings together patients organizations representing patients suffering from or caring for patients with extremely rare diseases. Our mission is to educate policymakers and other stakeholders about the need for policies that recognize the unique circumstances of extremely rare conditions and treatments and expand incentives critical to ensuring they can reach patients.